Protecting Private Information: 92% vs. 8%

Several days ago, I passed around a survey to gauge people's concerns about protecting their private information. The survey is now closed and you can see the results and comments here: Survey Results. In summary, 92% of respondents were more concerned with “Protection of my personal identity and financial data” vs. 8% with “Protection of my electronic health record data.”

I appreciate everyone's participation. Although certainly not a "Gallup Certified" survey, the breadth of people responding was very wide and, IMO, very representative of our society.

Clearly, we must and will protect both types of information, particularly in healthcare—this is not an “either/or” situation. However, as we spend limited time and money protecting our private information in general, it would seem that we should take these perceptions of public concern in mind. In healthcare, we’ve spent significant resources protecting personal health information as a consequence of HIPAA, and rightly so, but only recently have we focused similar attention on personal identity theft, as required by the Federal Trade Commission’s “Red Flag” rule.

Comments

Joe, you have such great comments and insight! I do agree that society is a bit naive to the implications of disclosing personal clinical information, particularly genetic data, but, the Genetic Nondiscrimination Act helps protect us to some degree, at least. That said, at this point in time and history, people are less concerned about protecting their PHI than I realized based on the comments in the survey, many people see their PHI as yawnful and boring. While I favor forward thinking and planning, I don't necessarily favor spending money on fears that don't exist yet.. if that makes sense. Granted, when it comes to genetic information, there are hidden knowledge bombs that will bother all of us, I'm sure. Right now, though, it seems that most people would rather we protect their money, first, then their life. -)

Dale, No offense, but, I don't know anyone who knows what private [medical] information and its implications are.

At HIMSS 2008, I attended a Genomic and HCIT lecture by our friends at Partners Healthcare. One boggling regulation they shared was that, in Massachusetts, privacy rights around genetic medical information change if your are symptomatic or not for the gene(s) involved.

I've previously posted several other blogs on Privacy, including Privacy Joy, that spell out very profound and hidden aspects of protecting private information. (I followed that post with a summary of related blog posts on HCI.)

As stated or implied by the other commentors, people have a much better understanding of their financial risk than their Protection of my electronic health record data. Perhaps these were the points you were obliquely making?

It's reasonable to assume that more accurate, comprehensive, and inexpensive genetic testing will arrive one day the question is more one of the pace at which this will take place. When combined with reliable evidence from epidemiology about the probability and magnitude of various maladies, the continuing genetic revolution promises to improve dramatically our ability to detect disease at an early stage, and treat it more effectively or even prevent it. Better, and earlier, knowledge about genetic predisposition to illness might help individuals take preventive measures to reduce the consequences of disease or even eliminate its onset. Enhanced use of more predictive genetic information may assist individuals in making lifestyle plans and choices. It also holds great promise in fine-tuning health care treatment, such as through more narrowly targeted "designer" drugs and gene therapy interventions.

But the offsetting concern encompassed in the catchall desire to protect "genetic privacy" is that one's personal genetic information might be disclosed to others without one's consent and then used to one's personal detriment.

Without question, any information that can be used may also be used badly. But a host of policy complications and administrative complexities arise if one attempts to craft a unique brand of legal protection against the disclosure of personally identifiable genetic information in the name of "genetic privacy."

Dale, I think the hype around the flicker worm reinforces even further the fact that while people may have concerns about health information leaking out, it's nothing compared to financial information.